posted
Has anyone been diagnosed and treated for Lyme with neuro symptoms similar to ALS? I feel like it is a stretch but I am hoping someone out there will have had similar symptoms- muscle weakness, twitching, involuntary muscle movement, some muscle pain, feeling out of it mind wise, and some tingling/numbness especially in teh fingertips some in the feet. Let me know if anyone has had this and been treated. It's a scarey thing to be faced with. Thanks. Michelle
Posts: 64 | From Pittsburgh | Registered: Sep 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Not being smart but just about everyone on here. Heres some info for you.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Michelle...I'm sure you will have a lot of people responding to your post...as TreePatrol stated, almost everyone has had those symptoms. I have NeuroLyme and have had them all.
Some may be persistant, some may go away and come back, and others, you may have once and never have again.
What you're seeing is fairly common among us...you are not alone. Keep reading as many posts as you can...and don't hesitate to post a question. Chances are high that one of us has gone through it before.
Bill
-------------------- Bill
**Question everything...it may save your life!!!** Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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You can read on the ILADS website (ilads.org?) about a physician from Colorado who was diagnosed with ALS, and the trials and tribulations that he went through to finally get a proper diagnosis of Lyme at Mayo Clinic.
As others have mentioned, what you describe seem to be classic neuroborreliosis symptoms. Good luck.
Doc J
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
My symptoms are exactly like yours -I mean almost identical! I am waiting for my appointment with my Lyme Literate Medical Doctor but my regular doctor, who is stumped by my symptoms, has ruled out ALS. With ALS, I believe the twitching happens when you are well into the disease and your muscles are dying. You would already know you have ALS by the time your muscles twitch. Of course, I'm no doctor. Good luck! Get an LLMD!
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I've experienced all the symptoms you described at some point.
I was also sent from specialist to specialist and only ended up considering Lyme as a result of an astute acupuncturist.
I've heard of a number of people dx with als, only to find out they test positive for Lyme.
To me, it tells me something about how seriously this disease is taken by ducks and how it's dx.
I know you'll find some good answers and advice here.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Yes, I've had every single one of those symptoms. 22 months of antibiotics for lyme and mycoplasma and I'm ~ 85% of my old self. Only an LLMD believed that it wasn't all in my head.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
My symptoms started about 4 years ago. Started with muscle twitching that eventually spread to entire body. There is virtually no place on my body that I don't get them. About 2 years ago I started seeing Drs. I had clean brain / spine MRI, clean EEG, clean EMG and nerve conductance test. All Drs thought I was crazy and kept telling me it was stress. I've also had a number of extrememly strange symptoms. I had pain in my testical for 2 weeks that went away with antibiotics (not sex related). My eyes will twitch really fast when they are closed, though I only know this from people telling me. About 1.5 years ago I started noticing coldness in my right foot. I have difficulty balancing on that foot and my right thigh is always tight. Over the past 2 weeks the coldness has returned and gotten more persistent. I also have experienced cloudiness with thoughts and memory over the past couple of months. These symptoms all come and go with great infrequency. I was convinced I had a neurological disease for a long time. This site has been the first place I have found other people with very similar experiences. Wondering if anyone out there has had similar symptoms?
Posts: 7 | From Central California | Registered: Sep 2005
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posted
I had all the symptoms you mentioned and I have a diagnosis of MS. Still going to a doctor on Monday who will be open to a trial of antibiotics I hope as the neurologist wouldn't even consider. May be Lyme but I've already had two Western Blot tests that were negative a couple of years ago. Gabby
Posts: 58 | From Georgia | Registered: Sep 2005
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posted
My symptoms started about 4 years ago. Started with muscle twitching that eventually spread to entire body. There is virtually no place on my body that I don't get them. About 2 years ago I started seeing Drs. I had clean brain / spine MRI, clean EEG, clean EMG and nerve conductance test. All Drs thought I was crazy and kept telling me it was stress. I've also had a number of extrememly strange symptoms. I had pain in my testical for 2 weeks that went away with antibiotics (not sex related). My eyes will twitch really fast when they are closed, though I only know this from people telling me. About 1.5 years ago I started noticing coldness in my right foot. I have difficulty balancing on that foot and my right thigh is always tight. Over the past 2 weeks the coldness has returned and gotten more persistent. I also have experienced cloudiness with thoughts and memory over the past couple of months. These symptoms all come and go with great infrequency. I was convinced I had a neurological disease for a long time. This site has been the first place I have found other people with very similar experiences. Wondering if anyone out there has had similar symptoms?
Posts: 7 | From Central California | Registered: Sep 2005
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posted
Gabriella.......how on earth did you get a neuro to be open to try antibiotics? I've tried and tried, and all I hear is he will offer memory enchancing drugs.
I see you are in Georgia...is there a doctor there who is seriously treating lyme? Please private message me.
quote:Originally posted by prvbs31girl: Has anyone been diagnosed and treated for Lyme with neuro symptoms similar to ALS? I feel like it is a stretch but I am hoping someone out there will have had similar symptoms- muscle weakness, twitching, involuntary muscle movement, some muscle pain, feeling out of it mind wise, and some tingling/numbness especially in teh fingertips some in the feet. Let me know if anyone has had this and been treated. It's a scarey thing to be faced with. Thanks. Michelle
These were some of my first sx. My PCP thought it was an extension of my "fibromyalgia" and tried to give me an antidepressant. Did a WB thru a local lab and gave me amonth of doxy "just in case"/ I got si8cker, and the WB came back neg.
I found this board, and found a real LLMD, and got a REAL WB thru Igenex, positive, of course,a nd started on oral abx. Took about 2 years for me to get 85% better, but going over my hx, I've probably had lyme for ~15 years.
Even now, I get ocasional flare-ups, and they manifest as those sx you have described above. Most all of us with what I call persistant lyme disease get them.
Go to the section marked seeking a doctor here and post your state/city and see what LLMD recommendations you get.
Best of luck.
Posts: 688 | From CT | Registered: Jan 2003
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posted
I've also had these symtoms at times though all are better now two years into treatment.
Posts: 925 | From California | Registered: Sep 2004
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